Happy New Year!

So Christmas was lovely but it seems like forever ago because SO much has happened between Christmas and New Years.

To rewind, Mr. MLACS flew into the  nearby city and we enjoyed a weekend of holiday fun there, including seeing The Nutcracker ballet (an annual tradition) and riding on The Polar Express train.

BG is at a *magical age* and she had started ballet/tap class in the fall. She LOVED The Nutcracker this year! I loved watching her watch the performance–she was riveted. We had balcony seats close to the stage and she loved being able to see the performance and the people in the audience below us. Mr. MLACS bought her a Clara dolly and a Rat King dolly and watching the two of them pretend to fight during intermission, hearing BG squeal and giggle, and feeling LS kicking in my belly is a moment I’ll never forget. BG looked so precious in her red and navy blue plaid dress, with her little pearl necklace–she looked like a real little lady. For the record, BG looooooves to dress up! Lives for dresses, bows, jewelry and “make ups” (which are lip balms). I wore a dress and make-up to The Nutcracker but I am generally a person who loves sweat pants, or for more formal occassions, jeans. I definitely did not spark her “extra-ness” because I am super low maintinence. But I do love to watch her shine ❤

The Polar Express train was really the best. BG was excited and bouncy! She was enthralled by the performances and the characters/actors invited her to participate several times. First, she got to help turn pages as a portion of The Polar Express book was read. Then, she got to be a reindeer–they placed an antler headband on her–and march down the aisle as we sang Rudolph the red nosed reindeer. But the most precious part, was when Santa stopped to say hello to her abd give her “the first bell of Christmas”. BG thought she was supposed to tell him her Christmas list, and she was so excited to see him she could barely get the words out, so I interpreted. She asked for “Toys for baby sister, toys for me, toys for Koa and Kitty, and toys for Mommy and Daddy”. She’s so sweet and thoughtful. And taking in her good intentions and her wide-eyed innocence, Santa turned to me and said “You’re very lucky”. And I know I don’t count my blessings on this blog very often because I mostly talk about the heavy stuff, but please know that I feel profoundly blessed/fortunate/lucky and that Santa didn’t have to remind me–but I was touched.

We returned home from our adventure on Christmas Eve and I was super sick with what seemed like the flu. I felt miserable. Luckily Mr. MLACS was feeling great and he got everything put together for Christmas morning–Santa brought BG a teepee playhouse and he got her a big-girl monogrammed chair and had a matching little-girl monogrammed chair for LS (since BG was adamant that baby sister needed gifts). Mr. MLACS and I each got each other one gift from ourselves + BG. It was sweet and funny because BG had watched a cartoon (Arthur?) and the kid was REALLY excited to buy his Mom a glass bird. So BG had decided I needed a glass bird, and Mr. MLACS went to great lengths to find and purchase a glass bird. I love it because it really shows how much we all love each other. BG and I gave Mr. MLACS cologne, which is what we always gave my Dad for Christmas when I was little, and it’s weird to be “the parent” now.

BG had some unwrapped presents and a stocking from Santa, and then 9 wrapped gifts under the tree, 4 of which were from my sister and the rest from us. I know she had a wonderful Christmas and that she got plenty of great gifts. But I cannot seem to shake feeling guilty that she isn’t showered by presents and attention from our extended family. I want Christmas to be special because we spend time together and make great memories, and not because of how many presents are under the tree. I genuinely feel that we–that our precious children–are better off without toxic family members in our lives (and that includes keeping my sister at arms length, although she does have a relationship with BG). But the holidays stir up my feelings and make me wish things were different–and I second guess myself. I miss my good old friends and wish we lived closer–it would be easier to accept the severed ties with our relatives if we had “framily” to spend holidays with. But all our friends are spread out and we move too much to really create a “village”.

I had a village though, in the town we just moved from. I didn’t fully realize how much some of my girlfriends cared for me until I had to say goodbye. And I felt sad to lose them, and bad for “abandoning” them since they were clearly more invested in our friendships than I thought.

The movers came to pack on Dec. 27th, they loaded on Dec. 28th, and on Dec. 29th we bid farewell to our dream home, and all the craziness of the past 2 years. Mr. MLACS and I shed some tears for what was and for what might have been. And then we journeyed for 3 days, and celebrated NYE in our new town.

Let me close by saying 2018 was a legit roller coaster of a year, with huge ups-and-downs. I worked hard to regain my health and fitness, while navigating life as a fledgling ostomate–I did it! I even put myself out there and became the leader of a fit moms club, got my friends involved, and met new people. I dealt with my Father’s death, my Maternal Grandmother’s death, and the absolutely maddening struggle with my sister over managing our trust. I started my own LLC and did grown-up stuff like creating my own will & trust and purchasing burial plots for myself and Mr. MLACS. I paid a lot of bills. We took a beautiful trip to Hawaii. I dealt with the constant fear of losing Mr. MLACS and dealing with his health scares. I did lots of stuff with BG and she started preschool and dance classes in the fall. We sold our house, and we moved a 17+hr drive North of where we lived. I’d say the most amazing and insane plot-twist of 2018 was we got pregnant quickly and without fertility treatments–now I’m 30 weeks pregnant with a healthy baby girl.

2018 was very trying, but I really feel like every bit of it was filled with purpose.

I wouldn’t change a thing.

XOXO,

MLACS

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Trying To Keep Calm and Carry On

I had a hard time getting to sleep last night, after googling “melanoma” and desperately searching for “benign growths that look like melanoma” and coming up with nothing–just pics of melanoma–so either people don’t post their “I thought it was melanoma but it was just an XYZ!” photos, or, anything that looks like melanoma IS melanoma.

I used to go to tanning beds and the beach. Often. And I’d cover up my face because my parents had skin cancer on their faces (around the nose and mouth) and had scars where these were removed. I didn’t want scars on my face. But skin cancer didn’t seem like such a big deal.

I was so stupid.

God I hope I raise BG to be smarter than me, to make better decisions than me.

I mean I hope I get to raise her period, but what if I don’t? What if I die while she’s still a child? While she still needs me? What if it’s because I didn’t wear sunscreen and went to tanning beds?! What if she thinks I’m awful for screwing up her childhood with my cancer treatment? A kid shouldn’t have the burden of worrying about her parents dying…

Mr. MLACS had a bad Cardiology appointment recently. I didn’t even blog about it but I had BG with us because it was just a check-up. Then they told us he had been shocked by his pacemaker on March 24th–his heart rate was 300bpm (I didn’t know that 300bpm was even possible). We had no idea. And then at the appointment his BP was 150/110 and his heartbeat was irregular. I went numb. We had no clue he was in distress. The color drained from both of us. We were panic-stricken. Mr. MLACS cried. And BG was fully aware that something was very wrong. Kids are very sensitive and intuitive. She had flashbacks of when he was hospitalized. And we were at the appointment for 3 hours. Doc said Mr. MLACS *must* lose 100lbs as quickly as possible (he has been slowly losing weight but not very regimented). He is 6’6″ and about 415lbs, and he needs to be closer to 300lbs to qualify for surgery to find the part of his heart that is malfunctioning and causing arrhythmias. Or if he needed a heart transplant he doesn’t qualify because of his weight. This appointment was April 22nd and since then Mr. MLACS has been working on his diet. We dropped $1,000 and he is getting a nutrition/exercise plan from an excellent trainer friend of mine.

So you see I’m already riddled with anxiety. My dad just died–both my parents are deceased. I’m stressed dealing with the estate (my sister). I am just 6 months out from having had my total colectomy and still learning to live as an ostomate. One of my good friends just had his big toe amputated due to melanoma.

And now I have this large, inexplicable black growth on my leg. I literally want to dig it out myself, I loathe it so much right now. I’m so freaked.

But instead…

I slept in (because Mr. MLACS knew I was up fretting about this melanoma thing). We went to home depot. I took BG over to play with the neighbor girls on their blow-up waterslide. I fed her lunch and put her down for nap. I’m trying to “keep calm and carry on”.

I’m trying So. F*ing. Hard.

I don’t want to alarm BG. And I don’t want to taint her life with my fear/anxiety/depression. Which is very difficult, since we are together 24/7.

I’m calling the dermatologist and being seen first thing in the morning, and no matter what they say I’m having this thing removed and biopsied.

But in between, I am trying to live, laugh, and love. I love my family SO much. I love my BG with everything I am. And if it’s cancer, I’ll fight. 20180417_095910_Film1.jpg

XOXO,

MLACS

 

Blunted. Muted. Faded. (Adrenal Fatigue after Prolonged Corticosteroid Use)

Terms which describe how I feel right now. I’m exhausted. I have alot of aches and pains in my muscles and joints. I’m cold all the time, and when I’m cold I can hardly move–it feels like a chore to get up from a chair and go to the next room. I’ve gained weight even though I’ve been eating healthier…

This is Adrenal Fatigue.

Post-surgery and a deadly fight with chronic illness. When does it get better and STAY better? Because I felt fabulous right after surgery…but then weaning off the Prednisone and pain medications revealed that my body is in rough shape and in no way back to “normal”.

It’s good that I’m off the Prednisone–my face has shrunk and I recognize myself in the mirror. My body now has a chance to recover from the damage the Pred did. But how f*cking long will it take to heal???

I’m tired of feeling like sh*t.

And I’m trying to help myself. Been eating more whole foods, way less sugar/processed foods, even though I crave sugar because *adrenal fatigue*.

I started going to the gym again, taking barre and power yoga and lifting weights. I only manage a couple days a week though, so I haven’t seen much results. I’m sore.

I started taking CW (charlotte’s web) brand CBD oil (cannabinoid oil) and it has helped me to feel somewhat better–it successfully weaned me off pain killers, as I was dependent on Hydrocodone (small amount, half of a 5-325 daily). And thank goodness because I have no way to obtain more pain meds at this time. Nor do I want to.

While I like feeling calm and not angry all the time (‘roid rage from presnisone), I miss having energy. I miss having intensity. I feel so lame now.

I read that it could take 12-18 months to recover from “moderate” adrenal fatigue. I really don’t have the patience to feel like crap for another year. I have an almost 3yr old to chase after. I have a house I still need to finish moving into and organize. I have a garage that is full of stuff that I need to declutter (sell/get rid of A LOT). I want to get in shape and look/feel amazing–I also have my 20th highschool reunion coming up in August. We might be moving again (Mr. MLACS is looking for a new position). And if I’m going to TTC, I have to do it soon because I’m 38yrs old already! Plus I want to do more with my life…

I don’t want to just feel ok, I want to feel *good* again. Soon.

XOXO,

MLACS

Try, Try, Try, Try it Again (learning curve as an ostomate)

In the words of Daniel Tiger, whom BG loves to quote, “Keep trying, and you’ll get better! Try try try!” She will sing this song to me at the most frustrating moments–like when I’m fumbling trying to work the tv remote to find the cartoon she wants. Bless her heart.

Well this weekend was an exercise in futility.

I had FIVE bag blowouts.

Like as in, my colostomy bag leaked/fell off and I had to clean up a literal pile of sh*t.

Five times.

I was doing SO well for the first 10 days post-op, until Friday, when I started to have sharp pains on the right side of my stoma. The pains would come and go, and I found they were worse when I had any sort of compression on the bag. So I tried to wear slightly less restrictive underwear (which I tuck the bag into–these are not ostomy-specific undies, just high-waisted Wacoal briefs I bought at Dillard’s last week). On Friday I saw my home health nurse but didn’t change my bag until after she left. Lo and behold, I found my skin was pulling away from my stoma on the right side where I was having the sharp pains. I was freaked out because:

  1. There was “output” (aka poop) in the crevice and I thought it could be infected.
  2. I had no idea how to address it–there are literally thousands of different products and appliances and I have a bathroom full of samples but needed to google what they are even for and how/when to apply them. So I’m all up-in-arms because I was woefully unprepared for this when I decided to change my bag. FML.

An ostomate wants to be prepared to change their bag. You want to have all your products that you might need within arms reach, otherwise if you have to jump up and search for things with your bag off and your stoma decides to “output” then you have a mess and it becomes a stressful situation.

I tore through my boxes of samples and found some seals–these things are supposed to help you get a good seal around your stoma and prevent leaks. My thought was that I could use the seal to cover up the open wound/crevice on my right side of my stoma, to keep it clean and hopefully make it stop hurting. So I nervously molded the seal and placed a new bag on, and it seemed to do the trick. The next day we got up and collectively took BG to her Little Gym class, where I mostly sat while Mr. MLACS participated with BG. Then we decided to go to a pumpkin patch about a 1.5 hours drive from where we live. We all got ready and I was pleased that I had managed to coordinate our outfits in a fall theme of blue jeans and shades of gray and navy blue–hoping to get a cute family picture. We get inthe car and 5 minutes down the road…

BOOM!

I feel my bag fall off and a warmth in my pants…

So we pulled over into an empty parking lot and I proceeded to clean up the mess. Poo everywhere. Luckily I came prepared–baby wipes, hand sanitizer, ostomy supplies (new bag, scissors, adhesive remover wipes, barrier wipes, gauze), fresh change of clothes and a ziploc bag to put my soiled clothes in.

It probably took me 20 minutes fumbling around in the drivers seat, but I got myself cleaned up and the bag changed. Then exhaled a long sigh of relief. It happens to everyone at some point, and at least I was prepared–I almost walked out of the house without that extra change of clothes and the ziploc bag, but my guardian angel must have been looking out for me.

We went to the pumpkin patch and had an absolutely wonderful time! There were pumpkins galore and lots of fun activities for kids. The air was crisp and the sound of childrens laughter echoed off every tree and hay bale and corn stalk under a clear blue sky. Perfection.

Then we got back to the car and I noticed my bag…was starting to come away from my skin…and I had no more bags and no more clothes, and a 1.5 hour drive home.

F*ck.

I had read that some ostomates would use medical tape or duct tape to hold their bags on in a pinch. And here in the South there is a Dollar General store like every few miles, even on the country roads. So I held my bag on until we reached a DG store and send Mr. MLACS inside to fetch ALL the tape. And chocolate. Because post-op my body craves a lot of chocolate, especially in emergencies.

I quickly duct taped the perimeter of my bag and said a silent prayer that it would hold another 45 minutes until we arrived home, and stuffed my face with a couple Ghiardhelli chocolate squares as I squeeled the tires out of the parking lot.

Just before we reached the house, I felt the bag coming unglued and reached my hand under my seatbelt to try to hold it on a couple more minutes until we reached the house. Then I hobbled inside the house, shouting for Mr. MLACS to bring me a trash bag and a pack of wipes. It was another ridiculous mess. By the time I was done cleaning it up I was thoroughly exhausted and my nerves were shot. My peri-stomal skin was also thoroughly irritated from all the bag changing. Someone brought us dinner, which was absolutely delicious, and we started to watch a Harry Potter movie (in honor of Halloween) and I think I fell asleep on the couch about 5 minutes in.

Then I woke up at 4am, with ANOTHER f*ing bag leak.

F*CK. F*CK. F*CK.

It wasn’t too bad but I had used a different bag/flange and the adhesive made my already irritated skin red and raw, so I had to try to address that. I googled and decided to dry it with a hair dryer and put some stoma powder on it. The first bag wouldn’t stick at all, so I had to cut another one. But finally, I got a bag on.

I was exhausted and laid around all morning, but since Mr. MLACS cannot drive for 6 months since he had his defibrillator/pacemaker placed, I amthe designated “errand runner”. And we needed some stuff from walmart–namely a warm undershirt and tights for BG to wear under her minnie mouse halloween costume at soccer practice that afternoon. So I rallied and schlepped myself to walmart. Got BG’s stuff and a few groceries. Tossed in a bag of peanut butter M&M’s for myself. Got back to the car and…

BOOM!

Bag leak #4 was in effect.

This time, I didn’t freak out. I sat quietly in the drivers seat and ate my peanut butter M&M’s.

Got home and it was chaos because we needed to get ready to leave for BG’s soccer practice. Mr. MLACS got BG ready while I addressed my bag–this leak wasn’t too messy so it didn’t take me long to clean myself up. We went to practice and I took lots of pictures while Mr. MLACS participated with BG–I love soccer so I usually do it with her but not that day, and to be fair 12 days post-op is a bit soon even on a good day. Then we came home and again someone brought us dinner (so lovely being everyone’s favorite charity case as of recently–I certainly won’t refuse a home cooked meal). And again I collapsed on the couch, exhausted and frustrated.

Woke up on Monday morning to…

Bag leak #5!

This was a couple hours prior to embarking on a 1.5 hour drive to see my Colorectal Surgeon and Ostomy Nurse. My skin was still raw and I knew they would have me remove the bag again, so I didn’t try anything fancy, just slapped on a one-piece drainable bag.

We got to the surgeon’s office and my blood pressure–which has been low since surgery–was like 140/80. Clearly, I was stressed out. I asked the surgeon’s nurse if he would “fix it” (meaning sew the skin back to my stoma on the right side) and I was surprised when she said “No, probably not”. Like…what? So he would just leave me with this hole that is causing me leaks and potential infection? WTF?

The Ostomy Nurse came in and explained that the body will “heal its self” and she has seen the skin pull away from the entire stoma and nothing done to repair it. Apparently, this is not uncommon and is actually expected in someone like me because my skin is thinned and my ability to heal weakened from the long-term  high-dose Prednisone I’ve been taking since January. I was disappointed because I wanted my stome *fixed*.

Instead the Ostomy Nurse took a look at my peristomal skin and decided to use an anti-fungal powder in the red areas. Then she chose to fill in the crevice between my skin and stoma with a bit of stoma powder, followed by “caulking” around my stoma with paste, prior to applying a new type of bag–the Coloplast sensura mio flex two-piece drainable bag/base. She used Hollister Adapt stoma powder and paste, and Cavillon 3M barrier/adhesive spray.

I spoke to my surgeon and told him things had gone well up until these bag blowouts, which really makes me wonder if I’m cut out to be an ostomate or if I ought to consider the j-pouch. It is stressful to have peri-stomal skin issues and to live in fear of bag blowouts, on top of the other adjustments of life with a bag. The surgeon said it will get easier. I hope he’s right.

So far, I’ve gone 24 hours without a bag blowout since the Ostomy Nurse fixed me up yesterday.

I’m hoping to have a somewhat relaxing day at home with BG and Mr. MLACS, doing a bit of cleaning and I want to bake a banana cake with cream cheese frosting. Then we’ll trick-or-treat this evening.

And Mr. MLACS returns to work tomorrow. I’m not ready for him to go back, mostly because I just like having him around and also because I’m scared of him going back to work and being stressed out and something happening again–he collapsed at work, if you recall. He was working 12+ hour days and he wouldn’t tell them “No”. He has said he will advocate for himself and insist on shorter hours and will not stray from doctors orders. I’m still freaked out.

But you know you gotta “Keep trying and you’ll get beeeetterrrr! Try! Try! Try!”

XOXO,

MLACS